Friday, March 14, 2014

A Minor Setback

So, I have a confession to make, and I am going to be brutally honest.  I have been saying and writing things like "Brennen is such a happy little boy" and "He brings so much joy to our lives".  Well, that used to be true, but right now, at this moment in time, it is not the case.

We are not sure what is going on with him, but for the past several months he has been having these periods of crying, screaming, and just general agitation that lasts for hours at a time. There doesn't seem to be anything anyone can do to comfort him. We change his position, cuddle him, pick him up and walk around with him, stretch him out on the bed and lie down with him. Nothing helps. He is not happy.

We try everything to distract him and entertain him. We read books, sing songs, play music for him. Still nothing. When he cries, it is not just a fussy little whine, it is an all out pain cry.  I took him to see our pediatrician, who went through all of the basics.. checked his ears, throat, nose, heart rate, blood pressure and oxygen level.. all were fine. They did x-rays of his hips, chest and back.. all look good.  We went to ENT, where they did a nasal endoscopy, but found nothing to be concerned about. There is no swelling or inflammation anywhere in his body, and his skin looks perfect. It is a complete guessing game at this point.

They did blood work a few weeks ago which all came back normal, and they ordered more tests and additional blood work today. We will wait to see if anything shows up there. We saw his neurologist who ordered an EEG, which we did on Monday. The EEG showed some seizure activity (not new for Brennen), but we are going to try a new medication to see if controlling his seizures will stop the discomfort that he is having. I am not entirely convinced that that is the issue, but at this point I am willing to try anything.

It has been very tiring and frustrating for everyone. I don't mind Brennen crying, I just wish there was something I could do to help him, and I am completely at a loss. There is no greater pain than knowing that your child is hurting, and watching him suffer is just killing me. My bones ache from the weight of carrying so much worry.

One of the most difficult aspects of Brennen's disability is the fact that he can't tell me what's wrong. He can't tell me how he is feeling, or where it hurts. Over the years, I have grown to understand a lot of his cues, but this time I have no idea what is going on with him. It is exhausting, and emotionally draining. I struggle to be patient and to hide my frustration. I can only imagine how frustrated Brennen must be, crying out for help and receiving none. Once again, I feel like I did when he was just a baby.. when he cried all the time, and nobody did anything to help him. They sent us home and told me that he would be fine.  Well guess what??  He is not fine.

I am the type of person who wants to find answers and solutions to problems. One thing I've learned since Brennen was born is that there isn't always an answer. Dr. Buckley reminded me this week that we don't know why Brennen is the way he is. We don't know why he has CP, and I guess that not knowing will bring with it even more unknowns as time goes on. I have to accept that part of our life. Not everything is going to have an answer. Not everything is going to make sense.

It is just a natural maternal instinct to want to rescue our children and take away all of their problems. I will never be able to do that for Brennen. There are times when I feel I am doing all that I possibly can and there are times, like now, when I feel like I am failing him.  It's funny how a (hopefully) minor setback can bring up all of the emotions from years ago, when we were first thrown into this world of 'disability' and 'special needs'. It's funny how months, even years can go by without a hiccup, with life seeming to be moving along just wonderfully, and then a few hard crying episodes can unearth all of those buried feelings.. more raw and more concentrated than ever.

I know that this is something we have to deal with right now, and I know that we will get past it. Brennen will be a happy little boy again, I have no doubt. I will do everything in my power to get him the help that he needs, and to love him beyond what any written words can describe.
Because I do love him. Because I am his mother.  And because he is my whole world.


  1. Our Meya appears to be similar to your Brennen and I know the pain of not knowing what is wrong. We do know that Meya's cp was due to her being a micro preemie and then she was left to lay without much intervention due to her young birth parents putting their wants over Meya's most basic needs. We have had Meya since she was 2.5 yrs old and now she is forever ours. Meya will be 8 this summer and we went through a period of increased pain two years ago. We had her checked out etc.. all the things you have done for Brennen. I was desperate for help and as much of a skeptic I was about going to a chiropractor I took the leap and started calling around. We found our doctor who has an amazing connection to Meya and he has helped her hugely with pain management. He right off the bat wanted to make sure we were not looking for a cure and that had me sold as I didn't want someone feeding me a line of bull about healing the damage, but instead just helping with pain. So for us this was a missing piece of helping to ease some of the pain and we are really thankful for his investment in all of Meya's care and working with the whole team to help her have the best quality of life with the body she got. Hugs to you, I know how painful it is to hear our kids cry and not have a definitive answer to why.

    1. Hi Dannette,
      Thank you for writing. It is so difficult when our children cannot tell us what is wrong, or how to help them. Of all the things we have to deal with, the fact that Brennen cannot communicate is the hardest some days. I am going to look into a Chiropractor for him.. I have also spoken with a friend of mine who is a Chiropractor and she highly recemmended it as well. We have started the new medication for seizures, but so far I don't see any change or improvement. We will keep plugging along.. one day at a time.
      Please stay in touch.
      All the best with your sweet Meya!
      -Julie xo